by Amy B. Scher
Even though parts of me ached more deeply than ever before, I could feel that part of my healing was in the leaving.
I have that same feeling now, crouched on the dirty floor of my hospital room, cramming my belongings into three dusty suitcases. India has become an unexpected safe haven that now feels like home. But if I want to grow into a new life, I cannot stay suspended in this temporary one.
The zipper on my largest case is busting open, even as I try to sit on top to contain it. It quickly becomes clear that there is not enough room inside for all the belongings from my new life.
What I have collected includes: enough Ganesha and elephant figurines to open my own shop, several packets of Indian spices, a plethora of bangles I was told (after my proud purchase) certainly contain toxic lead, and a few dresses that I couldn’t say no to.
I also have drugs. Lots of drugs.
Over the years, I’ve gotten accustomed to needles, nasty-tasting pills, and messy powdered concoctions. But what I’ve never quite gotten accustomed to is the MUST PAY CASH notes when I pick up my prescriptions at the pharmacy. More often than not, my insurance doesn’t think I need these medications, even though my doctors do.
In India, these same prescriptions cost about a third of what I pay in the US. And the pharmacy delivers to my room for free. I have taken several different antibiotics here while we try to figure out what’s best for my body and the stem cells. This is likely to continue for some time at home, so I’m leaving with everything I might need . . . and I’m taking it for a bargain.
At home, I fork over $500 each month for a common antibiotic called Zithromax. Here, the exact same brand and dosage comes in just shy of $14. The IV antibiotic I’ve been receiving in India costs more than $70 a day at home. Here, it costs $5.
I feel a driving urge to take requests from Lyme-disease-sabotaged friends back home and even new friends following my blog. I want to bring candy-colored pills and liquids to all in need. If US Customs would let me, I could be the Santa of sick people, bearing a tiny reprieve from one of the challenges of managing uncontrollable, chronic disease. In this cost-effective country, I am so overjoyed at my “found” money, I almost lose sight of the unfairness of having to take home all this medicine in the first place.
I decide the only way to deal with this packing crisis is to ditch one of my medium-size suitcases and get a brand-new, larger one to take home.
I hit the streets, which are, as always, bubbling with action. Delhi’s winter has finally passed, and even though it’s not officially summer yet, it’s hot enough to make me sweat. The sisters have put away the blankets in their nursing stations and are now using hand fans to stay cool.
I make my way down the road, past a man selling coconut water, around a corner where a woman begs for rupees, down another street full of children playing cricket, over a center divider where a giant black cow is lounging, through a pungent food market, and finally over two more lanes of insane traffic.
That’s when I see a luggage shop with every size and type I could ever need: rolling suitcases, duffel bags, and backpacks galore. They are spilling out onto the broken dirt paths that barely resemble sidewalks, and passersby are kicking dust on them.
Examining my choices, I find one with a sticker made from masking tape. This is my bag—a new container for my new life. It reads: 2XL.
I name it Big Blue 2XL and buy it for a bargain.
Heading back to the hospital, I decide to take a new route, even though I’m not totally sure it’s even really a route back at all. Instead of sidewalks, huge ditches run along the storefronts, allowing only an extremely narrow path beyond to walk on. And I now have an enormous suitcase to balance. It must be lunch hour because it seems everyone in the city is on this street with me. There is no room to carry my new purchase by my side. It is now clear why Indians carry things on their heads: bowls, food, bundles of sticks, you name it. If you don’t, you risk getting knocked down, tipped over, and pushed against a car.
When in Rome . . . I flip the suitcase up onto my head, one arm strapped around each side, and begin to make my way back to the hospital. I revel at my awesome balance, my confidence in navigating the streets, and my ability to perform both these tricky tasks with ease. I hear deep belly laughs from some of the locals as I walk through the streets. Turning, I see I am actually faring almost as well as the lady next to me, who is carrying a huge pile of produce on her head. I can only imagine what I look like: white skin, long blond curly hair, pink lip gloss, oversize sunglasses, and a gigantic suitcase on my head.
When I get closer to the hospital, I cut through the back alley. A dog in a sweater sleeps at the entrance of a hidden Hindu temple, children throw peanuts at each other, and a monkey skips through the crowds. That is when I hear the voice. It’s him. His prayers are echoing through the air clearer than I’ve ever heard them before. It is only one more minute before I see my guru with the megaphone. He is younger than I imagined, clean-shaven with slicked-back hair, and is gliding on a black bicycle with crooked handlebars.
I can finally understand some of his words. I keep reciting the first part over and over so I don’t forget it—“Aum shreem hreem kleem klowm gum . . .”—but the rest dissipates into the chaos around me. He turns my way with his dark chestnut eyes and offers the start of a smile, as if he knows me in the same way that I know him. It’s the last time I will ever hear his voice.
I will later learn that these words I have come to love are from the Maha Ganapati Mool chant. This chant is used to invoke Lord Ganesha, the elephant-headed god, the remover of obstacles. It is chanted before beginning new projects as a way to remove obstacles and aid in the success of one’s efforts.
Out alone in dusty Delhi, I feel fear and freedom simultaneously. This mystical land has pushed me to the brink of insanity, but has also carried me into the depths of a love I’ve never known. It has been both everything I despise and exactly what I have needed. Without India’s insistence that I survive it, I am stagnant, safe, like a boat hugging the shore and wasting my sails.
The obstacles of this life are plentiful, but so too are the opportunities to find peace. I feel this out in the city, but even more so in the wild uncertainty of my own unsteady heart.
With the suitcase on my head and this new life before me, I ask myself, How does it feel to be on my own?
The answer that comes surprises me.
It feels necessary.
9
Yes
AFTER INDIA: THE YEARS THAT FOLLOWED
My return home from India in February 2008 will be one of both rapturous joy and absolute uncertainty. Lauren has offered something that only the most generous of sisters would: for me to move in with her, Craig, and Zach in Monterey Bay, California, a city by the sea. I accept gladly. Zach is now a full-fledged toddler, and he and I make up for lost time by doing everything together. We visit playground after playground and have deep conversations over sushi about why restaurants make their tablecloths white. I can run multiple errands at once without getting fatigued. I don’t trip when walking on uneven terrain. I don’t trip at all. I take only a few medications. I feel free as a bird.
I will also survive a handful of lows—medical tests that shake my confidence, reminding me I’m not invincible; coming face-to-face with fears about my life and my future; and continuing to struggle with being patient and kind to myself, which still doesn’t come so easily. The doctors think that I’m likely over Lyme, but still consider me an experiment. No one knows what to do with me or how to ensure I’ll retain all the improvements I’ve gained.
In July, almost six months after I left, I return to India—my beloved nemesis and best teacher. Both the hospital and I look different. The lobby has gotten a serious face-lift—modern black faux-leather chairs have replaced the old wooden furniture, and the rickety reception desk has been upgraded to a sleek modern one that is double the size. As for me, my hair is a new and darker shade of blond and I am now comfortable w
earing only minimal makeup. I have also gained twenty healthy pounds since my first trip here, which does not go unnoticed. “I like this. I reaaaally like this!” O.P. keeps repeating through his sparkly teeth. The sisters run toward me, spin me around like a doll, and puff out their little cheeks. “You look fattened!” Sahana shrieks, then quickly follows with, “This sooooo niiiiice!”
In many ways, this trip echoes the first. I take more antibiotics to protect my cells, my emotional and physical stability is sometimes questionable, and India continues to teach me my greatest lesson—that every day is a swinging pendulum between saving your life and enjoying it. It also delivers added improvements: clearer cognitive abilities (I finally have the concentration to read an entire book!), less light and sound sensitivity, more strength, and increased endurance.
When I bid my last farewell three weeks later at Indira Gandhi International Airport, I intend to let my ten-year visa lapse and never choke on the city’s pollution again. It is a chapter closed. But the assumption that I have kissed India good-bye for a final time only proves my stupidity. If there is anything India has shown me, it is that it will do with me what it pleases.
The remainder of the year is a heady mix of emotions and adjustments. I have no real place in the world. Everything needs to be re-created. I can see so far ahead, and yet not anything at all. Sometimes I revel in the freedom of being able to float without direction . . . there is nothing to do or be right now. But then the vast emptiness of it becomes luminous and scares me.
Instead of allowing this emptiness to intimidate me, I decide to say yes to filling the space of it. I think that’s how rebuilding is done. So it’s exactly what I do: I start saying yes.
My first yes comes during my birthday month of September when I drive back toward the life I ran away from and ask Jay to join me in attempting some version of closure. It doesn’t feel right to close this chapter on illness without letting him close it too. We head back to my favorite town of Ojai, with its abundant trees and rose-colored sunsets; and the place where I believe I was bitten by that tiny tick. Since our breakup, the strain and sorrows between us have been heavy; so much so that we hardly spoke while dividing up our belongings and differences. But on this day, as we stare at the deep, sprawling crevices of a strong and sturdy symbolic oak tree, it is all unity. Jay photographs the moment and cheers while I sprint around it, as many times as I can, leaping over bushes with an energy all its own. Bob bounces behind me the way dogs do, unsure of what he’s celebrating but joining in for the pure love of it. I see Jay wipe his eyes behind the camera as I stomp all of those unpleasant memories back into the earth, as hard as I can, and put them to rest.
My next yes comes in December 2008, a year after my first trip to India, when Dr. Harr asks if he can test me again to see if I am now Lyme disease–free. “Yes!” I say. The test comes back after two long weeks of waiting, and when it does, it replies, “No.” No, you are not clear. No, you are not perfect. The test is positive for Lyme disease. And even though all the doctors tell me not to panic, I do. They explain to me that sometimes this happens when your body finally recognizes a disease and is fighting it. This could even be a good thing, they reassure me. But the panic isn’t because I may not be free of Lyme disease. The panic is because I have to tell this to a lot of people—all the people in my life and all the people following my story and my blog. I want to hide this new information, let nobody see me naked in this way, and bury the test results very far down somewhere deep in the ground. But instead, I do the opposite. I tell people. I write it on my blog. I bare my soul. I say yes to being human, and doing it publicly. It’s the hardest thing I’ve ever done in my whole life and will take much practice for me to become comfortable with it. But what I realize at this point is that maybe I’m not destined to be a Lyme disease superhero or a stem cell poster child or any kind of inspirational figure at all. Maybe I’m here for what we’re all here for: to show each other that it’s okay to be human.
Next it is time to say yes to the fact that adjusting to being healthy is harder than I thought it would be. This is all I’ve wanted, yet the feat of rejoining a world that I’ve missed out on for so many years is overwhelming. How can I catch up now? What’s next? How will I get a job again with such a huge gap in my work history? Where will I live when I move out of my sister’s guest room? How will I ever afford it? Can I find a partner who will accept all of me? I want to stretch out completely into the world, yet I am still tied to a brain that’s acclimated only to a life of illness. The doctors’ voices are in my head, telling me not to get stressed or catch a cold or the flu, because it could cause me to relapse—a common occurrence with Lyme patients. Am I safe? Can I enjoy this luxury and freedom of my improved health? Will it all slip away when I’m off having fun and not looking? What if it happens again? What if it is already happening again and I just don’t know it yet? I am always either afraid of life with illness, or afraid of life without it.
But I think it’s important to look at every stretch of time in our lives as a whole, and to identify how we feel most about it, most of the time. When I add up everything that happens during this stretch of time after India, including when things aren’t total perfection, I can still identify my primary feeling about it: thankful.
My final yes for 2008 comes when I am asked to speak about my stem cell experience to a roomful of resident doctors at Stanford University. All eyes are on me in my high heels (yeehaw . . . heels without tripping!), tight jeans, and silk button-up top. With the lights above me humming, my nerves take over and I forget the opening line of my speech. What comes out of my mouth instead is this: “I wish you could have seen me one year ago today.” It is this moment that will kick off a grant project, created to study the benefits of stem cell treatment in Lyme disease patients. While the grant will never end up being funded and approved, the invitation to work on the project will take me back to India the following year for one final yes.
It is during my third trip to India in March 2009, full of street smarts and feeling like a native, that I convince myself it’s perfectly fine to eat a succulent tandoori shrimp lunch from a food cart. It turns out I do not have the stomach of a native. When I am predictably struck down with Delhi belly, I am forced to extend my trip for another five days, staying at Nutech Mediworld at the insistence of Dr. Shroff. This city was not done with me yet.
A few days later, down in the physio room, I am finally just a visitor and no longer a patient. It’s there, amid the loud Hindi music that is beating through my entire body, that I see Charlotte for the first time. Her brown curly locks are peeking out from under a Kelly green baseball cap. She is visiting her mother, Janet, a sweet British woman I had met while recouping at the hospital. Janet is around fifty years old, and almost doll-like, with fair skin, pink cheeks, and lilac-painted fingernails. She has ALS (Lou Gehrig’s disease) and is here hoping these stem cells are the miracle she needs. For the past few mornings, I have been visiting with her as she excitedly counts down to Charlotte’s arrival. Janet adores Charlotte and has promised me that I too will fall in love with her. She paints a dreamy picture of us jaunting through the city together, lunching, and forming a fabulous friendship.
Charlotte is magnetic, quirky, and energetic, a film trailer editor from London with the most brilliant British accent. Whatever she says automatically sounds a hundred times more special because of the way she says it. And just as Janet predicted, I actually do want to lunch with her. She is the wittiest person I’ve ever met. She is so funny that when she makes me laugh, I involuntarily throw my head back. We go on adventures each day together, for three days in a row. Sometimes it’s just for tea. Sometimes it’s to wander the streets, where we see random peacocks or cows, and discuss the hopes and horrors of India. When she comes back to my hospital room to hang out, I ask her to take her shoes off. I want her to stay awhile. Charlotte is not just a new person to me, but a whole new kind of person to me. As I learn more about her, I only be
come more enthralled. Her latest work project is Mamma Mia, she lives in an old match factory in east London, she’s gay, The Sound of Music is pretty much her favorite thing ever, and she loves the smell of fresh cut grass. I have never even noticed the smell of fresh cut grass. I find out that she already knows about me, because she has been following my blog. Which means she already knows I’m human. I can’t decide how I feel about this, but it’s too late anyway.
On our last evening together before I go home, Charlotte and I sit on the steps of the hospital, deep in conversation. I am not sure how I will live without our daily walks and shenanigans. I am also not sure how I have become this intrigued by someone in such a short period of time. I want to never stop seeing her. I want to melt into her.
I am in love with Charlotte.
I sit with this for a moment, but I don’t let myself panic. I tell myself I am probably wrong, even though I know I’m not wrong at all. And then I think, No, no, I am not wrong I am in love with Charlotte. This is perhaps my biggest yes, because even though I don’t yet tell her what I’m feeling, I say yes to telling myself the truth right when I know it. It is about time.
Charlotte is my coming home. It is not because she provides for me what I need in order to be happy or what I cannot provide for myself. It’s because she says in every single way, I accept you. And this helps me continue to say it to myself. There are no parameters or consequences. We are equals. That is the story that Charlotte tells me about myself. With Charlotte, I want to love with my emotions wide open, even though it is terrifying.
Some of my family and friends are in shock, asking me, “How does it feel to be with a woman?” and sometimes, “Are you totally positive this is what you want?” But the thing is that this feels like nothing out of the ordinary. It is easy and right. Sometimes these questions make me think that I should be concerned and maybe even go to therapy to figure out what this really means about my past relationships and myself. But thankfully, by some miracle, and in a complete deviation from my usual MO, I end up not making this into something it isn’t. I don’t psychoanalyze the situation. I dig deep for the real feeling inside of me, which is this: It is love. The end. No more discussion. I am not worried, confused, or inquisitive about my sexuality or what this means in the scheme of my entire life or past. Because this is only love. And love, on its own, before we start to pick it apart, is really quite straightforward.
